A video on
Pregnancy in Chronic Myeloid Leukemia
Posted 22 January 2013 - 10:21 PM
Interesting, thanks Gerry. I made my husband sit through it the other night.
There are quite a few things with management that we did differently. We had 2+ months washout, where as the presenter doesn't recommend this. Actually in my case it made no difference as I needed most that time to recover fertility from the high does glivec I was on but for most this is a big issue. There is a 2011 Hematology paper that recommends a 3 month washout in either parent (male or female) which seems a bit excessive. Then there was the actual management of the expected relapse - I was treated much earlier with interferon, leukapheresis does seem very end stage. I didn't really like the comment that she would try to push the pcr testing out to 2-3 months because the patients become anxious - that just didn't suit me. We tested every 6 weeks and I was much better at knowing I was relapsing than I would have expected. The main thing was knowing you hadn't progressed.
I guess it just illustrates that this whole area is really experimental.
I've been back on treatment for 3 months (after 7 months off). I had a PCR result after 6 wks of tasigna which showed a 0.72 log decrease so a good early response to restarting treatment. When I get the 3 or maybe 6 month result I should plot and post the whole thing for others to see. I seem (fingers and toes crossed) a good responder which I think is essential for trying these things - well for us with our risk tolerance. While we did stop treatment very early I was PCRU ( >4.0 log reduction) when we stopped and that was unnerving enough - it came back fast. You'd have to be the coolest of cool customers to stop treatment at less than MMR.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 23 January 2013 - 12:13 AM
I read another article where the Oncologist didn't require any washout and the couple started trying for a baby the minute she stopped taking Gleevec. Not sure when exactly she fell pregnant, but she had a healthy baby.
As you say it is still experimental, they've only recently come to the conclusion that we can probably expect to have normal life spans, which for some women will include wanting to have children.
Posted 25 January 2013 - 06:12 PM
Thank you so much for posting this Gerry! Josie!, Hi, I meant to post before when I saw you had posted about your time off meds trying for a baby. Just wanted to say thanks for sharing your journey like that and to let you know that it really helps people like me who are intending to do something similar in the future. I am so sorry that the treatment didn't work out for you in that time, I have been through fertility treatment myself pre cml and I know how tough and nerve wrecking it can be without having the cml to worry about. I really hope it works out for you in the future and look forward to seeing how you get on. I am just diagnosed a few months and also on the Tasigna. I'm hoping to get to a point when I can try for a baby too. It's hard having to sideline that wish at the moment. I haven't spoken to my consultant about the flush out time or anything yet as we're still a long way away from even thinking about it. I haven't even had my 3mth bone marrow yet! As far as I know my plan/wish is to hopefully try to get to pcru status(if possible for me!) and stay there for a year or two before I'd stop medication to try. I'm just aiming for that window at the moment. Great to see you're results are coming back good already.
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